Advocate in the making
I'm very passionate about advocating for my health and the health of countless others that are affected by blood clots. 5 years ago I found out that my blood clot was not fully diagnosed in 2013. I was originally told that the blood clot was just in the groin of my right leg. During a follow up ultrasound 7 months later, the ultrasound tech dropped a bomb on me by telling me that the clot wasn’t just in my groin, but it went all the way down to behind my knee! On March 6, 2014, I was laying on an operating table in the Vascular Department of MUSC wondering why the entire team of doctors and nurses immediately stopped my venogram and were huddled in the adjoining room looking at me and discussing something. At that moment I knew there was more serious news about to come. Within moments, they all came back in and started cleaning up. My Interventional Radiologist informed me that he was unable to access my left iliac vein as well as my right iliac vein. They were both so occluded with chronic clot that he couldn’t get the catheter to budge! What he also found out was that I was not getting any return blood flow from my left leg. They were originally going to increase my dosage of Lovenox (anticoagulant injection) and wait for a month, then recheck me to see if the clotting dissolved any. My husband and I both didn’t like that plan and didn’t trust that anything would change, because it had already been a year since I was diagnosed and nothing had improved yet, so why would it be any different in another 30 days?!? After mentioning our feelings to my Interventional Radiologist, he decided to get aggressive (my kind of doctor!). I would come back in one week and they would do another venogram, but this time they would start me on thrombolysis with tPA (clot dissolving medication) and would be utilizing an awesome new device called Angiojet to help break up and suction out the chronic clotting that ran from my right common and external iliac veins, across to my left common and external iliac veins, and then down my left leg to behind the knee. I was wide awake for the entire surgery, which lasted 6 1/2 hours.
After the blood clots were removed (only a little bit of chronic clot remained attached to some of the vessel walls) they had to utilize a balloon to open up several of my veins. The veins had been weakened and damaged by the blood clots having been in place for so long that my veins started narrowing and collapsing after the clots were removed. The Interventional Radiologist diagnosed me with May Thurner Syndrome at this time. He was able to see that the right iliac artery was overlying the left iliac vein and compressing it to the point there was no return blood flow from my left leg. After ballooning the left iliac vein open to the necessary size for adequate blood flow, two stents were placed to keep the vein open and restoring the blood flow. After this surgery, many of my symptoms resolved and I felt rejuvenated and like I had a real shot at getting my life back.
About six weeks after the surgery, my Interventional Radiologist approved for me to start physical therapy to help restore my mobility and increase my endurance. I was really enjoying my sessions and I was starting to feel stronger and feeling better about myself. I’d completed the original prescribed sessions and the therapist as well as my doctors felt like I would benefit with additional sessions, so I continued. A few weeks into my second round of physical therapy, I started noticing that my track pants I’d wear to therapy were feeling tight around my left thigh. I was also cramping more in my groin area than I had since the surgery. I immediately knew that I was clotting again. I told my therapist and she didn’t want to believe it, because I’d been working so hard and I was also still on the Lovenox injections. I notified my primary physician that I was experiencing these symptoms and he also didn’t believe it could be a recurrence and thought I’d just pushed too much at therapy. Thankfully I had a follow up appointment with my hematologist at MUSC coming up soon. The ride to MUSC the morning of my appointment was excruciating. If I hadn’t believed I was clotting again before, I certainly did during that ride! I was in so much pain when I was called back to see the hematologist, that I crawled onto the exam table and laid down to try to get as much pressure off of that left leg as possible. My hematologist was very concerned when he saw how much pain I was in and ordered a rush ultrasound and a d-dimer at the lab. The d-dimer was negative, so he automatically thought that it wasn’t a blood clot recurrence, but maybe a bakers cyst. The ultrasound would be able to confirm. Unfortunately, because the iliac veins sit very deep in the pelvis, 4 ultrasound techs could not determine if there were clots or not, because they couldn’t get a clear visual of the iliac veins. I ended up being scheduled to come back the following week for another venogram to figure out what was going on, and if it was more clotting, they would address it then.
The morning of July 29, 2014 I was being wheeled into the OR of the vascular department at MUSC, when my Interventional Radiologist approached me to discuss his plans for my venogram. He said he didn’t think that I had developed more clots, but that he definitely wanted to make sure because I’d already been full of surprises. Once he accessed my left groin, it was official. Both of my stents were occluded and clotting was starting in the left iliac veins again.
My Superman (Interventional Radiologist) struck again and ballooned the stents and iliac veins until the clotting was cleared and the stents and veins were adequately opened. After the surgery, my Interventional Radiologist and Hematologist discussed how to move forward with my treatment, because I’d developed more blood clots while being active and while being therapeutic on a large dose of Lovenox. It was decided that I would be switching to Warfarin and would need anticoagulants for life, due to my propensity for developing clots. They also decided to start me on Plavix (an antiplatelet, like aspirin) for life. Plavix was added to help keep my stents from clotting again.
It seems so fitting to me that my Survivorversary is the same month as Blood Clot Awareness Month. I’d decided early on into my journey with blood clots that I didn’t want others to encounter the same issues and mistakes with their diagnosis and treatment as I had. Blood clots should not be taken lightly, because they can be very deadly. There’s a reason they are known as “the silent killer”. Do you know your risks?
#NotSorry #stoptheclot #bcam #awarenessmatters